Last week I joined a group of Central alums, Dr. Terry Rosell, and a few others for the Central Alumni January Midrash and Meal. We gathered in the Clendening library, University of Kansas School of Medicine, for dialogue informed by Rebecca Skloot’s book The Immortal Life of Henrietta Lacks from an ethical perspective. Even though my calendar was full attending this event was well worth my time.
Prior to making my reservation to attend I knew nothing about the book or Henrietta Lack’s story. After reading the first few pages I quickly realized Rebecca Skloot was not only telling Henrietta’s story, she was provoking a response. Each chapter unfolded ethical issues of racism, medical malpractice, systemic injustice, abuse, poverty, all spilling forth from Henrietta Lacks life story.
Henrietta, a 31 year old African American woman, presented with an unusual cancerous cervical tumor. The doctors had never seen a tumor quite like hers. In 1951 at John Hopkins hospital medical science researcher Dr. George Gey collected cells from her tumor without Henrietta’s consent or knowledge. Her cells were the first cells to live in a test tube and continue to multiply. Gey named the living cells HeLa using Henrietta Lacks name. However, when Dr. Gey publically shared his medical science triumph he did not disclose HeLa’s truthful name. When Henrietta died that same year she and her family knew nothing about her famous cells. By a chance coincidental meeting in 1973 Henrietta’s family first learned of her fame.
Studying HeLa cells for medical science eventually led to a multi-million dollar industry. Tubes of HeLa shipped out all over the world. HeLa cells have been used to “develop drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson’s’ disease; and they’ve been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating, and the negative cellular effects of working in sewers.” “HeLa cells were one of the most important things that happened to medicine in the last hundred years.” (p. 4)
The issues presented opportunity for lively discussion and a great challenge to those of us gathered at K.U. At what point are living, dividing cells no longer considered human, and when are they no longer ours? Should there be compensation for harvested cells and tissues? Where would healthcare be today if Gey had not collected those cells? How do we fight capitalism and governmental participation? What about ongoing issues of racism, poverty, and healthcare? Should Henrietta’s family be compensated in some way? How do we or should we address these continued issues in our ministries today? Whether human cells and collected tissues are immortal or not, many painful stories of injustice remain alive. How do we say I’m sorry?
Deborah and Sonny, two of Henrietta’s grown children point towards our much needed response. Deborah, “I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors?” Sonny, “Hopkins say they gave them cells away, but they made millions! It’s not fair? She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?”
Rebecca Skloot took the first step by paying attention to her initial awareness of Henrietta Lack’s story. Her passion and desire to uncover and reveal the truth resulted in years of digging, exploring, listening, and caring. In her effort to make things right proceeds from the book support The Henrietta Lacks Foundation established by Skloot to benefit Henrietta’s family.
My lingering question is what will we do to make things right?